In honor of Autism Month, Autism Housing Pathways described ways to develop a housing strategy based on MassHealth’s Adult Family Care/Adult Foster Care program. The outline was issued as a series of daily Tweets in April. Here they are, in a single post. Bear in mind, this strategy is specific to Massachusetts.

It’s Autism Month. Let’s look at developing a housing plan, one Tweet at a time.

The Adult Family Care (AFC) program can pay you to provide support to your adult child who lives with you.

AFC is a program of MassHealth. MassHealth is Medicaid. Changes to Medicaid could endanger AFC.

To qualify for AFC, your child must need prompting with 1 or more activities of daily living. You can’t be the guardian.

In April, Autism Housing Pathways posted a series of Tweet length “Autism Month Housing Thoughts of the Day”. They comprised a mini-tutorial on housing for individuals with autism and other developmental disabilities, including housing subsidies and supportive services. They are updated and republished here, with three additional comments to add information on Medicaid waivers. Acronyms are spelled out here, as they were not in the original Tweets. To learn more about many of the services mentioned, check out our Turning 18 checklist.

Of those with family involvement, only about 12% will be both eligible and prioritized for Community Based Residential Services through the Department of Developmental Services (DDS) at age 22.

It frequently takes 5-10 years to plan and implement a housing strategy; start at 18 if the goal is independent living by 30.

The housing equation is: bricks & mortar + food + services = housing. There are subsidies for all, but not all can be combined.

Supplemental Security Income (SSI)* can be used for any part of the housing equation. People can apply based on their own income at 18.

SSI has asset and income caps; other income can reduce benefits. Try to avoid assets in the person’s own name.

SSI makes someone automatically eligible for MassHealth (Medicaid). Medicaid is the main way to pay for services.

Social Security Disability Insurance (SSDI)* can be used for any part of the housing equation. Assets and unearned income do not affect benefits.

SSDI makes you eligible for Medicare (not Medicaid) after 2 years. Medicare can’t be used for long-term services.

For those disabled before 22, SSDI can be based on their own income or a parent’s, once the parent retires.

Try not to retire until your child receives SSI as an adult. Otherwise, they may not qualify for MassHealth.

Those who don’t qualify for MassHealth can qualify for CommonHealth if they work 40 hours/month.

People can also qualify for CommonHealth by meeting a one-time spend-down.

The most important housing subsidy is Section 8. Apply at age 18. Go to www.18section8.org to learn how.

The wait for a Sec. 8 voucher can be up to 12 years. Apply at 18.

A family member can be the Sec. 8 landlord for a person with a disability. But they can’t live in the same unit.

Someone who needs a live-in aide can get a 2-bedroom Sec. 8 voucher. But the aide can’t be immediate family.

Food stamps and Sec. 8 will not result in a reduction of SSI benefits. People usually qualify for food stamps at age 22.

The food stamp recipient needs to buy and prepare food “substantially separately” from the rest of the household.

MassHealth State Plan Services are the main way to pay for long-term services and supports.[Addendum: other than Medicaid waivers — waivers are addressed below.]

MassHealth State Plan Services are entitlements. There are no waiting lists if you qualify.

There is a basic equation for creating supported housing for a family member with a permanent disability:

Housing + Food + Services = Supported Housing.

There is a little more to it, of course, such as transportation and recreation. But solving the basic equation is the most important part of the process.

For each element of the equation, there are government subsidies for which your family member may be eligible. Some of them can be used only for housing, some only for food, some only for services, and some may be used for anything.

The most important housing subsidy is Section 8. Most people have heard of Section 8, but there are a lot of preconceived notions about it that are often wrong. Let’s talk a little about Section 8, and why it is so important that your family member apply for it.

Section 8 is a program of the U.S. Department of Housing and Urban Development (HUD). It is designed to make housing affordable for those who make less than 50% of the average income in a given geographic area. Many families make the mistake of thinking their family member isn’t eligible because their household income is too high. This would be true if their family member wished to use the voucher to live in the same unit as the rest of the family. But if the goal is for the family member to move into their own home, this isn’t the case. If your family member is 18 or over, and has a permanent disability that results in a limited income, he or she is almost certainly eligible for Section 8.

There are two types of Section 8: mobile (sometimes called portable or tenant-based) and project-based. Mobile Section 8 is a voucher assigned to a person or household: it can be used to rent a house or apartment on the open market. The voucher holder pays 1/3 of his/her income to the landlord, and the organization that issued the voucher (usually a local housing authority) pays the rest of the rent to the landlord, using money from HUD. When the voucher holder moves, he/she takes the voucher to their next home. Project-based Section 8 is different; it is not assigned to a person or household, but to a piece of property, like an apartment in a specific housing project. The resident again only pays 1/3 of his/her income in rent, but cannot take the voucher with him/her when moving.

Often people confuse the two types of Section 8, and assume that applying for Section 8 means their family member will have to live in a housing project. In reality, holding a mobile Section 8 voucher allows for a high degree of flexibility. After the first year of using a mobile voucher, the user can take it anywhere in the U.S. And while normally a voucher holder cannot rent from a family member, this is frequently allowed for voucher holders with a disability, as a reasonable accommodation, provided the voucher holder doesn’t live in the same unit as the landlord. A voucher holder with a disability who needs a live in aide can use the voucher to rent a two-bedroom unit. Provided the aide is someone who wouldn’t be living with the person if not providing care, the aide’s income doesn’t count in qualifying for Section 8, and the aide doesn’t need to pay rent. (Provisions for aides also apply to project-based Section 8.)

Because a mobile Section 8 voucher is so useful, waiting lists are extremely long. In Massachusetts, it can take up to twelve years to get a voucher, depending on where you live. That’s why it is imperative for your family member to apply for Section 8 as soon as he/she turns 18, if he/she wants to live on his/her own by age 30. To learn more about mobile Section 8 and how to apply for it, visit Autism Housing Pathways’ companion website, “18? Section 8!”.

In addition to mobile Section 8, there are other kinds of subsidized and affordable housing. While not as flexible as mobile Section 8, they are worth knowing about; one of them might be a good fit for your family member. They are:

State elderly housing: 13.5% of beds in state-supported elderly housing in Mass. are reserved for younger individuals (aged 22 and up) with disabilities.

Project-based housing: this includes both project-based Section 8 and projects funded by local housing authorities.

Private affordable housing: developers who received tax credits are often required to rent a percentage of units at an “affordable rate” (often 30% of 60% of the area’s average income). While this is not usually affordable for individuals whose only income is Supplemental Security Income (SSI), a parent or other family member can often structure a regular payment to the individual raising income high enough to make it doable. (This will result in a reduction in the person’s SSI, though.)

Single Room Occupancy housing through Caritas Communities: this is a furnished room in a larger building, with shared bathroom and cooking facilities. Rent is usually about $145/week. Caritas properties are in walking distance to mass transit.

Mass. housing vouchers: Massachusetts has two types of housing vouchers of its own, the Mass. Rental Voucher Program (MRVP) and the Alternative Housing Voucher Program (AHVP). They work similarly to mobile Section 8, but an MRVP voucher holder pays 35%-40% of his/her income in rent, rather than 30%. AHVP is specifically for persons with disabilities. These waiting lists are frequently closed, and when open are usually prioritized for the homeless, but are worth knowing about.

In the last four months, I’ve participated in person-centered planning for a number of young adults with developmental disabilities. The goal of these plans was to create a housing strategy, ideally to be implemented in the next 1-3 years. What turned out to be the elephant in the room in all these plans was the need to improve independent living skills. It didn’t matter if the individual was college-bound or likely to always need 24/7 supports — all needed work in this area if they were to live as independently as they were capable of doing. Given the shortage of supportive services, and the high cost of paying for them out of pocket, it became clear that skills training needed to be a top priority.

While my person-centered planning experience brought this realization into sharp focus, it wasn’t new. I have seen this pattern over many years, including in my own family. Schools tend to lack experience in teaching daily living skills, and prefer to focus on academics. The Massachusetts curriculum frameworks have few objectives related to living skills, and none that are addressed by high-stakes testing, so there is no obvious pressure placed on schools by the state to address the issue.

Families are frequently overwhelmed simply trying to get their student with special needs to school on time, to any therapies, and through any homework – and that does not begin to address the demands of work and caring for other children. A common dynamic is that families have attempted to teach their child skills in a haphazard fashion, adolescence has created a bit of a power struggle, and the fledgling adult perceives direction from Mom or Dad as nagging. If there is a history of Mom or Dad eventually giving up (“It’s easier to do it myself”), the young person may have learned to wait them out. More subtly, there may be unaddressed fears that contribute to an unwillingness to learn skills – a common one is fear of using the stove. Either way, the result is learned dependence that can hinder a young person’s ability to move out on their own.

So, how do you break the cycle? One good place to start is by taking inventory, to find out what skills your child has and what they need. The Adolescent Autonomy Checklist is a wonderfully comprehensive list of skills for independent living. It covers everything from setting the table to opening a bank account. Not all skills are realistic for all individuals, but just about anyone will benefit from something on this list. You might try completing the list yourself, and, if appropriate, have your family member complete it, too. Once you’ve taken inventory, pick a few key skills to work on. Here are a few examples, aimed at very different hypothetical individuals.

Johnny:
• Make a sandwich
• Wash towels
• Load the dishwasher

Carla:
• Make dinner with a crockpot
• Use a debit card
• Take The Ride

Alex:
• Find a street address
• Turn off the water main
• Flip a circuit breaker
• Fill out a 1040-EZ

Don’t try to do all the instruction yourself, especially if your family dynamic has reached the power struggle stage. Enlist the help of others. One very important place to start is the school, if your family member has not graduated or aged out. Eligibility for special education extends to age 22. Even if MCAS has been passed, you can defer taking a diploma while receiving transition services — IDEA was “designed to meet (students’) unique needs and prepare them for further education, employment, and independent living”. Getting out the door, clean and dressed for work, and able to navigate to the workplace all fit the bill. Skills training can and should be included in the IEP and addressed in the transition plan.

Another resource is the Centers for Independent Living. Run by and for people with disabilities, they frequently have programs where slightly older adults with disabilities take on a coaching role, teaching skills like money management and navigating public transportation. Here are links to Mass. CILs and to organizations with similar programs:

Don’t forget to include siblings and family friends. Travel training may sound dull, but going to Game Stop on the bus with a sibling might be an adventure. Similarly, learning to cook with Mom may sound like a chore, but working with adult family friends to prepare and host a series of dinner parties at different houses is a whole different matter.

Enlist technology. One young man was intrigued by learning to make a sandwich when the first step was for him to take pictures of every step of Dad making a sandwich. Similarly, there are a number of apps that can be very useful for teaching skills. Some examples can be found at http://autismhousingpathways.net/links/#Skills

Probe hidden barriers to find work-arounds. For example, someone afraid of the stove may be willing to cook with a crockpot, a microwave, a rice cooker, or a magnetic induction burner. Someone afraid to drive to a certain destination may be nervous because he’s never driven through a toll booth. There may be a route that doesn’t involve tolls, or the person may overcome the fear if he’s accompanied by someone the first time. Ask why the person isn’t willing to do something – “Does X make you nervous? Why?” You may be surprised by the answer.

Most importantly, look for buy-in from your family member. If he or she doesn’t own it, it isn’t happening. Some of this is a matter of framing. Just about all young people want their independence. Help them understand skills are the passport to independence. If they put up a road block, find a way around it. The person who doesn’t want to fold clothes may be willing to fold towels. Pride is also a powerful motivator. Someone who sees cooking for herself as a chore may be excited by the idea of cooking for the family. To help make the connection between skills and independent living, consider using Autism Housing Pathways’ housing workbooks (http://autismhousingpathways.net/services/presentations/; scroll down to “Housing workbooks”). Each touches on necessary skills, in the context of a larger workbook on living independently.

Acquiring better living skills is a key to cost-effective housing and successful independence. Taken in small chunks, it’s not only do-able, it’s a source of pride and accomplishment. Good luck!